Thanks for visiting!!!

Haven't checked out CysticLife yet? Join today!

Search This Blog

I Invite You to become a follower of this blog as we Take Awareness To a Whole New Level Together

Why do I have RunSickboyRun.com?

Blessed with Cystic Fibrosis and a positive attitude, it is my duty and passion to show the cystic fibrosis community that anything is possible through this blog that discusses the daily trials and triumphs that accompany not only life, but a CF life. RSBR is a hub for comfort, information, advice, encouragement and understanding. It is a place where no question is ignored, no accomplishment is too small, no goal is too big, and every comment is cherished.

What The Members Are Saying!!!

Feeling Lucky?

Ronnie Sharpe

Mandi (Wife)

Mckenna (Daughter)

Bennett (Son)

Jezzabel (2002-2016)

My YouTube Videos

Wednesday, August 15, 2012

A common response that many of us get when we tell someone, or a parent tells someone, that we have CF is, "I'm sorry". I've heard this myself 1000s of times growing up and I heard it said to my mom a 1000 more. I think there are some things we have to keep in mind when we hear that phrase and I'm so glad that this question was raised to me:

Recently something has been bothering me and I thought you might have some input on it. My daughter is 14 months old and has CF. I don't tell everyone I meet that she has CF but I don't hide it when it comes up. I've noticed a lot of the time when I tell people their response is "I'm sorry". I'm not sure why exactly but that response really bothers me. My husband tells me not to over think it that it's just their way of showing concern. In my mind though I feel like they are counting her out or showing pity on her and I don't want that.

So I guess my question is, what do you think an appropriate response would be to them or should I just let it go?

I understand your frustration and know that it is a common struggle among parents of kids with CF.

Here's how I look at it. I've been told my whole life "I'm sorry" and it hasn't affected me negatively one bit. That is a fact however because my mom raised me to be a very self-reliant person. She also corrected others who would use that phrase, but in a loving way. As you know, they are coming from a place of sympathy, which they feel, is best in that situation. I mean think about it, all they probably no about CF is that it's a disease "that robs children of air" and forces them to take medicine "all day long for the rest of their lives".

If you heard that about somebody else's child would you feel sorry for them? I sure would. Would you "count them out"? I sure wouldn't. Generally speaking, people react in a way that's been socially groomed because it's socially acceptable. The most socially acceptable reaction to give to someone who is in a tough spot is "I'm sorry".

But anyway, back to my mom. She would respond to a person who said "I'm sorry" with the response that she would like to see from that person the next time. So when it was "I'm sorry" her response was "Nothing to be sorry about. He's a crazy kid who loves throwing the ball in the backyard and chasing his ball around. Life is great!".

If there is something you want others to know about your child's life apart from CF, then you have to tell them. You frame the conversation and "control it" before their pre-conceived notions about the disease control what they say.

Just keep in mind though that often times saying "I'm sorry" is not a way of showing pity, but their way of showing they care.